A Network for Life

“We were just a group of friends, bringing our skill sets from our jobs, to help Avi,” says Amy Yamner Jenkins (MBA 2006), who became very close to classmate Avi Kremer in the weeks after his diagnosis with ALS and helped him develop and launch Prize4Life. “At first it was just some of us from our Section I. Then it was other students and professors. If you knew Avi—he is so inspiring, no one says ‘no’ to him.”

Indeed, dozens of HBS students, alumni, staff, and past and present faculty members have contributed to the creation of Prize4Life. From the moment Kremer fell ill, HBS was there. Classmates Guy Yamen, Nate Boaz and Andrea Marano were instrumental in helping launch the organization. Professor Jan Hammond, his section adviser, made the calls that got him an appointment with Dr. Robert Brown, the leading ALS doctor in the region, who now serves on Prize4Life’s board of scientific advisors. Professor Vicki Sato has also served on the Prize4Life board.

When they were ready to set up Prize4Life, Kremer and his peers got advice from professors Alan Grossman and Robert Steven Kaplan. Pat Light, who was then dean of student support services, worked closely with Kremer to ensure that his needs on campus were met. And HBS students—from Kremer’s class until today—have actively raised money for Prize4Life, while many alumni donors continue to support the cause, including many students dumping ice buckets over their heads as part of the recent viral #icebucketchallenge campaign. But in this case, everyone who did the challenge also made a donation.

“I can easily count more than 20 HBS people who have been actively building and serving on various roles as volunteers,” says Kremer. “Not to mention hundreds of HBS donors. I think that the fact so many of them came to my aid is a testimonial to the rapport, humanity, and cohesiveness of the HBS community.”

Professor Josh Margolis helped to write and now teaches a case on Prize4Life in his LEAD class, ensuring that future HBS students understand the drive and determination of a few business students to turn the tide on a deadly disease.

“[Avi’s] ultimate dream was to become a CEO of a company that was doing something meaningful,” says Prize4Life cofounder Nate Boaz (MBA 2006). “The fact that he’s living out his dream has had a profound effect on everyone. “I’m amazed at how HBS just surrounded him with support. His legacy will live on at HBS for his balance of courage and humility. He was courageous enough to pursue his dream, yet humble enough to know he couldn’t do it alone.”

He can no longer walk, talk, or even swallow, but Avi Kremer (MBA 2007) won’t let that slow down his pursuit of a cure for amyotrophic lateral sclerosis (commonly known as ALS). As founder and former CEO of Prize4Life, the nonprofit he launched in 2006 with the help of his HBS classmates and professors, Kremer has shone a light on this so-called orphan disease, infused millions of dollars into ALS research, and removed some critical barriers to the development of treatments.

“Our focus, from the start, was to get drug companies to invest money in ALS,” says Kremer, who was diagnosed with the disease in 2004, just weeks into his first year at HBS. “We studied the process of drug development and realized two things: First, without industry involvement there can’t be a treatment for ALS, because developing a single drug costs hundreds of millions of dollars. Second, that drug companies can invest billions of dollars in research and development, so if we could convince them that ALS is a good investment for them, the market forces will do more than all the ALS foundations worldwide can do in decades.”

Using a prize model, Prize4Life essentially “pays for results,” says Kremer’s friend, classmate, and board member Amy Yamner Jenkins, who is vice president of marketing at Education Elements in San Francisco. “We created a pot of money—a prize—to get people to focus on what we thought was important.”

This unique approach was the result of a meeting with drug companies and top researchers convened by Kremer and his classmates while they were still at HBS. The team learned that ALS was not a priority for drug developers because so little was understood about its mechanisms, making it a risky investment.

“We realized very quickly that we needed to bridge the gap over the ‘valley of death’ between the research, which was academic, slow, and basic science, and the drug companies, who were looking for blockbusters for large markets,” recalls Nate Boaz (MBA 2006), Prize4Life cofounder and board member, who is now managing director of talent strategy at Accenture in Atlanta.

The meeting yielded more lessons that would become the basis of Prize4Life’s mission. First, an effective biomarker—a kind of test that could measure the progression of ALS over a short period of time—did not yet exist. Without it, drug trials relied on longer, more costly observations of disease progression. Next, collaboration and sharing of data and discoveries was critical to expanding the knowledge base for the disease. And last, researchers needed a proper mouse model for lab studies.

Prize4Life sprung out of HBS in 2006 with a full complement of newly minted MBAs on board and with guidance from current and former faculty such as Rob Kaplan, Pat Light, and Jan Hammond. Sections other than Kremer’s adopted Prize4Life for their charity auctions and students across Harvard University took up the cause.

A game-changer

Since then, Prize4Life has accomplished many of its goals.

In 2011, it awarded its first $1M ALS Biomarker Challenge prize to Dr. Seward Rutkove, who has developed a way to measure electrical impulses in muscle tissue, and therefore measure changes in those impulses as the disease progresses. This one achievement can effectively reduce some costs associated with clinical trials by giving researchers a faster way to measure disease progression.

In 2012, Prize4Life awarded the DREAM-Phil Bowen ALS Prediction Prize4Life, which sought to identify a method for discerning whether an ALS patient has a rapidly progressing form of the disease or a more delayed-progression form. The challenge leveraged the largest ALS clinical trials dataset ever created, the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database, which was developed by Prize4Life together with Massachusetts General Hospital. Independent of the prize, PROACT is a powerful tool for biomedical researchers, statisticians, clinicians, or anyone else interested in garnering clinically meaningful information about ALS from "big data."

Dozens of research teams are currently competing for another prize, the $1M Avi Kremer ALS Treatment Prize4Life, which is looking for a treatment that leads to a 25% extension in survival in an ALS mouse model. This prize is closing in June 2015. Prize4Life has also worked with Jackson Laboratory to develop a colony of ALS mice to be provided to competing teams at little or no cost. To address the barriers to collaboration, Prize4Life has partnered with the Biomedical Research Forum (formerly Alzforum) to launch the ALS Forum, an online community for ALS research news and resources.

“Prize4Life has proven very successful in its strategy,” says Kremer, who lives with his family in his native Israel and stays in touch with his Prize4Life teams via Skype and by using adaptive technologies. “After eight years, in which we have raised over $10 million, the ALS landscape has radically changed. Most of the big drug companies are setting up ALS research programs and the number of ALS research publications is skyrocketing.”

While effective treatments remain elusive, Kremer and Jenkins know Prize4Life has moved things forward—not just for ALS, but for many other diseases that suffer from a lack of funding and attention.

“One of the top ALS researchers recently told me he thought it was ‘fair to say that if there was a measure of impact per dollar on furthering the ALS drug development, Prize4Life would be ranked at the top,’” says Kremer. “However, until I—and other patients—can walk, talk, and use our hands again, our work is not done.”